Re: Surgery for chronic CH

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Posted by Yuko on September 28, 1998 at 14:36:38:

In Reply to: Surgery for chronic CH posted by anne on September 28, 1998 at 13:44:31:

Hi, Anne. A couple of years ago, I heard about a successful surgery by University of Alabama. A friend of mine sent me the newspaper article (sorry, I don't have it anymore). Apparently it was for CH patients who do NOT respond to medications (Verapamil, Imitrex, O2, etc.). It was so new at the time of the surgery, and no insurance companies would recognize it therefore the person had to pay out of pocket ($40k or so, as I recall). Probably medical center gave them a break because it was so new or experimental??

A couple of weeks ago, a friend of mine informed me that her boss, CH sufferer, had his brain poked by a neurosurgeon in San Diego (where I am) and completely got rid of CH. I don't know the exact procedure, but this left him with numbness on the CH side face after 4 office visits. (He doesn't know if he's drooling, like after a dental visit.) This side effects may not be for everyone since he was ok until the third treatment, but as a woman I have to really think about the possibility of numbness of the face. We can't think straight in the midst of the pain and feel "whatever it takes to end the misery", but you may want to consider whether you want to take this kind of chances. I will ask my friend to introduce me to her boss to find out more about this and email you the neurosurgeon's phone number or post it here. Hang in there.

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